Thursday, May 26, 2011

Slow and steady prevails once again ....

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So,I have been hesitant to put this out there.Might be my superstitious, try not to jinx it, ridiculously warped way of thinking.Who knows why exactly?Hard to tell.But tonight seems like as good a time as any to share.It's a topic that I have touched on from time to time.A subject that has seriously frustrated the heck out of me in many moments.I think,well,I actually know,that I have shed tears over it.Shameless,wasteful tears.And I have given up a whole bunch of times as well.Resigned and talked myself into believing I just didn't care or that it didn't matter but really,in the end,it did matter and I did care.A lot.

The topic:Food.Zoey and food.Zoey and not eating food.Zoey losing all of her oral eating,in what seemed like a blink of an eye.My girl, that was g-tube fed,24 hours a day,for the first 6 months of her life.Me,pumping milk those first 6 months.Hoping and praying that she would somehow miraculously start nursing.Them,the naysayers,looking at me with their pity filled eyes,wondering was I actually entertaining the possibility that a child with Down syndrome and a host of other issues,was really going to just take up nursing at some random juncture in her little life.Well,I knew she would.I knew that once her heart was repaired,that the child that I watched and willed, with every fiber of my being,to live,I knew,she would.And she did.And it was miraculous and just as quickly,in a little over a year,nasty seizure meds. and even nastier chemo,would rob her of it all.

I told myself and everyone else, that it was fine.That all that truly mattered was that she was here.Alive.And it was true but still I hated the fact that she stopped nursing and stopped eating her heaping bowls of babyfood.So,we did feeding therapy.Lots and lots of feeding therapy.Until I could no longer take it and she,she was so very over it.I literally had every tool and every trick of the trade and still,nothing.We took breaks every now and again and when I started back up ... nothing.And then,about a month and a half ago,I plucked that child down in her high chair and we had a go at it again and this time,this time,she didn't cry.She opened her mouth and she took a spoonful.And then another.And then another.It wasn't pretty but it was in there and we high fived and clapped and cheered and she ate.And she continues to eat.

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It still isn't pretty.But it is getting better.She is up to 2 jars a day.2 jars.I can hardly believe it.A beginning.A beautiful,hope filled beginning.We have had many of those over the last 4 years.With each one of them we find ourselves rejoicing.We marvel in this child of ours and we are reminded by her mere, yet spectacular existence, to never underestimate the power that lies within the tiniest of fighters.Why I lose sight of that along the way from time to time,is beyond me.But I really needn't look far for that reminder,it lies right before me, everyday,as Zoey works so very hard to live up to the anthem of her magnificent life .... "Slow and Steady Wins the Race".Yes indeed it does baby girl.Yes it does.


33 comments:

Stephanie said...

SERIOUSLY? Over a month ago? You've been holding back the biggest and greatest news for over a month!!!
TWO jars a day, Heather that's amazing!!! Figures too just like Miss Z to just decide "pretty" or not, to eat. love her!!!!! I bet in no time she realizes there's chocolate in the world and demands some.

this is truly wonderful news, and I know how it weighed on your heart. i'm sure it only gets better and better. so very happy for BOTH of you :)

Anonymous said...

That's wonderful! All in HER own time, when SHE is ready and not before...Zoey rules! So glad for you guys, another hurdle has been jumped.

Robyn from Otisco Lake

Becca said...

Your posts always manage to move me to tears. That is TRULY a beautiful, hope-filled beginning. That's SO amazing! I'm glad you posted about it, because even if there are setbacks along the way (doesn't sound like there will be if she's been at this for a few months!), you now have the whole Ds blogosphere cheering and high-fiving along with you. You are the queen of patience, and Zoey is the queen of surprises. :-)

Claudia said...

Now THAT really made me cry. You are ALL little wonders, each of you because you are all plain beautiful human beings. Love you.

Unknown said...

Way to go Zoey girl. You're a star!!!!

Lacey said...

When I started reading, feeding is what first popped into my mind. I did the same thing, pumped for 8 months, until it was clear that he wasn't going to nurse again.
2 jars!! Oh that is fantastic! Can you imagine if in a couple years you could lose that g-tube? Did you ever think?!

The Boyds said...

Go zoey!!! Congrats to you as well! This is a huge accomplishment!

Maureen said...

Yay, yay, yay!!!

Runningmama said...

Tears in my eyes for you sweet friend! Way to go Zoey!

Anonymous said...

Two jars a day - Awesome, awesome Zoey! This is a HUGE, HUGE step! Know this issue has been hard on you Heather, along with all the other things - but once again, - Miss Z leads the way in her own time.
Way to go great grand niece! I'm calling your grandparents as soon as I sign off! (maybe they already have heard the good news)

Beautiful photo of you Miss Z

Love & hugs to everyone

Aunt Bluebelle


Aunt Bluebelle

The VW's said...

YAY!!! I am so happy for you! I know that must do your heart good! Keep it up Miss Zoey! You are amazing! Hugs!

Anonymous said...

My littlest princess warrior reminding me constantly that the tiniest steps forward soon win the war. Give her a big hug. Christy Pinuelas

Sweet Pea's Mommy said...

Way to go Zoey!!!! That is wonderful and amazing! I know your mommy is so proud of you just as we are too! Hugs!!!!

Kaden Epstein said...

Woo Hoo Zoey...Thinking of you guys always!

Emma said...

Well done Zoey! you've made another milestone and I know there are many more to come! fantastic!

Blessings,
E x

ardith said...

Whoo Hoooo!!!!

Jamie said...

I am always amazed at Miss Zoey :) Im also a little envious..My Madie has not eaten food for a looong time..sometimes I feel like Ill have a 12 year old on bottles! Great Job! :)!

colleen said...

Amazing but not unexpected... this little one seems to know what she needs to do! So happy for you as the roller coaster you have been on settles down into a nice peaceful ride.. always in a forward direction. Makes me think I should keep trying new foods with my very picky eating first born. Have the happiest of weekends!

Kristin said...

Zoey - you go girl! That is simply fantastic!

Scrappy quilter said...

Now I agree with Stephanie...you held that back from telling us. That's incredible however even more incredible is that girl of yours. I'm in tears reading this. I'm so happy it's working for both of you. Hugs and love

Unknown said...

Last month, when you said she was "slowly eating baby food"..I just knew she was going to pick up on it. I have no doubts when it comes to Zoey prevailing!! Yay ZOEY!!

just jean said...

Oh my goodness! Wonderful news! Slow and steady really does win the race, you know! And surely, Miss Zoey is a gold medal child!!

Bethany said...

That is an amazing, wonderful, terrific, joyful accomplishment. She is such a little miracle, and she will continue to do the impossible in His time! From nothing to two jars of baby food is awesome, and who cares if it is pretty or not! She is stunning!

thepiersolfamily said...

YAHOOOOO! That's awesome!!! Go Zoey! Thrilled thrilled thrilled for you all! Definitely thanks for sharing!

Peter Olson said...

I love that story of the "Tortoise and the Hare".
"Puss in Boots" is also one of my favorites.
Both stories have very smart and persistent animals, the Tortoise and Cat, respectively.
It is amazing how much insight and wisdom can be gathered from such short simple stories.

Last Sunday in Church, we were blessed to be sitting behind a mother and her baby boy. She was making him smile. What a beautiful smile! What a beautiful child!

I couldn't help but think of Zoey too, another most amazing and beautiful child.

Keep up the progress, "slow and steady" as she goes!

Jeana said...

Such good news, just the boost I needed to hear right now. Kaelyn isn't much of an eater either, other than her bottle, and I just hope that way day she will decide its not too bad, but until then I will just keep trying and reminding myself of little Zoey and her patient, persistent mamma.

The Annessa Family said...

I AM CRYING LIKE A BABY! OH MY GOODNESS!!!!!

Celebrate EVERY victory...small or large...this is a HUGE victory!

God is good!

Brooke Annessa
www.theannessafamily.blogspot.com

Victoria Strong said...

This is A.M.A.Z.I.N.G.!!! So, so, so wonderful! So proud of her and so proud of you!!!

Shelly Turpin said...

2 jars! I am very impressed. Way to go to both of you. Thank you for sharing the hope.

Elizabeth said...

Oh, my goodness. I don't know how in the world I missed this post. I am so happy for you. There's something so primal about food and mothering -- I still remember it like yesterday when a flippant nurse told me that "nursing wasn't everything" when the ACTH made Sophie crazy for food and she had to start drinking a bottle. I also remember the deprivations of the keto diet as being some of the most traumatic in our life with Sophie.

Hooray for Zoey! Slow and steady is PERFECT.

Mama Mason-Mann said...

Oh Heather, what wonderful news!!!! I know your pain and joy and fear of jinxing it. I know it all. It IS so hard when they don't eat. I pumped for 5 months in hopes of continuing nursing at some point, but she never did. Tube feeds filled our days, while I LONGED to give her food, through nursing or even a bottle. She eventually took 2 ounces. Then 4. Until gradually she was sucking down full bottles. It was a SLOW and steady pace, but you're so right, slow and steady wins the race! She's now tube free and eats and drinks like a champ. I know some day Ms. Zoey will be there too. HUGS.

Annie said...

she is awesome! High fives and cheers for you both from Ollie and me!

SECRET PEPPER PERSON: said...

Ah, the eating issues. I feel your pain. The Boy is like one of those air plants. I don't know how he survives!